Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, December 19, 2013

I just received the following inadequate response from Jeffrey Collura from the Omni Hotel Parker House in Boston.

Hello Mr. Peace,

I am writing in response to the survey you have completed. Thank you for sharing your feedback with us. We will be reviewing your feedback as a group and implementing anything that would make our ADA guests’ stay more enjoyable.

Thank you for staying with us.

Sincerely,

Jeffrey Collura

Director of Rooms

What a disappointment. Hello? Really? I would think one would err on the side of formality rather than use the colloquial hello. How about an offer of a free room or a refund? I read reviewing feedback as a group means no changes will be made any time soon. In fact the response appears to be a pre-written stock reply. The Omni lost my business for sure.

Thaddeus Pope and I disagree on many things. However we are quite capable of sitting down and discussing where we agree and disagree. So it is thanks to him and Facebook I came across the following video created by the Canadian Heart and Stroke Foundation.

I am stunned by this video. The express purpose of the video according to the Heart and Stroke Foundation is to promote good health. Link: https://www.makehealthlast.ca In a highlighted box next to the video it states "Canadian are living longer. But not necessarily healthier. On average, we'll spend our final ten years with sickness and disease.. However, we can change this. The choices we make now can help shape a future of strength and vitality instead. The Heart and Stroke Foundation wants to help Canadians like you make those choices. So you can spend every moment not just living, but truly alive. Now's the time to Make Health Last." One is then supposed to take a risk assessment.

I will accept the intent of this video was to promote good health. I took the risk assessment. Apparently I have a good diet. I am physically active enough but I could drink a little less alcohol and reduce the consumption of salty snacks (like I didn't know this). The Heart and Stroke Foundation is undoubtedly promoting a healthy life style and making some common sense suggestions. Again, the intent is good. What disturbs me is a word that is not used in the quote above--disability. While the word disability is absent, it is used as a counterpoint to good health and quality of life. Disease and illness are bad. Disability goes hand in hand with disease and illness thus by extension disability is just as bad. I am not being an alarmist. I offer up the following counterpoints that are disturbing:

Quote: "We'll spend our final ten years with sickness and disease".

Translation: The final ten years of life you will be a burden upon others and family. You will be disabled and lose your dignity. You will be a drain on limited health care expenditures.

Quote: "We can change this".

Translation: If you alter an unhealthy diet, become active and avoid stress you can avoid becoming disabled. Fear is very effective.

Quote: "You can spend every moment not just living but truly alive".

Translation: Death is preferable to a life with a disability. One cannot have a disease and illness and have a good quality of life.

One word though leaped off the page and sent a chill down to my level of paralysis--help. The Heart and Stroke Foundation wants to help Canadians. When someone wants to help me, especially in a health care setting I am sure of one thing--I am screwed. When I hear the word help I am instantly on high alert if not fearful. This is part and parcel the history of disability. Many people want to help but no one ever asks why or how. A predetermined outcome has been decided under the guise of help. These decisions are usually made without the input of the people they are designed to help. Disability history is replete with help for the disabled. Help in my mind is associated with travesties and nightmarish narratives. Examples abound:

Women and men sterilized without consent. Read Unspeakable: The story of Junius Wilson by Susan Burch & Hannah Joyner.

Forced and coerced institutionalization: Read Acts of Conscience: World War II, Mental Institutions, and Religious Objectors by Steven Taylor.

Ugly Laws few even know existed. Read Ugly Laws: Disability in Public by Susan Schweik.

I could provide hundreds of other examples and suggestions. The skeptic will posit: "Come on Peace you are talking about the past. The ADA has been great for people with a disability." This statement is correct and false at the same time. The ADA does indeed protect the civil rights of people with a disability but there is no social mandate for the law. The ADA is perceived to be an onerous and unfunded Federal mandate. Please do not expect me to celebrate--not when a man such as Timothy Bowers who experienced a devastating spinal cord injury is counseled by his family and physicians to die within one day of his injury. I can not celebrate knowing Christina Symanski, a quadriplegic that dehydrated herself to death because she felt her quality of life was insufficient. I cannot celebrate when a profoundly cognitively and physically disabled child is unlawfully sterilized at the urging of her parents and physicians at a leading children's hospital in the nation.

The Heart and Stroke Foundation tried to help but there is a dark underbelly graphically illustrated in the video. Good parts of life include bikes, family life, walking, fishing, vitality, jogging etc. Bad parts of life include wheelchairs, stair lifts, medication, assistance eating and drinking, hospitals, nursing homes, oxygen, social isolation etc. This overly simplistic dichotomy of good versus bad is inherently destructive. The video might prompt some to embrace a healthier lifestyle but at what cost? The fear and alienation it promotes is unsettling because it reinforces the already existent social isolation of the elderly, terminally ill, and disabled. I think we need to rail against this as a human rights violation. This is the sort of help I will gladly accept.

Wednesday, December 18, 2013

I was one of several disability rights activists that spoke yesterday before the Massachusetts legislature's Joint Committee on Public Health in opposition to H 1998, which would legalize assisted suicide in the state. The group called Second Thoughts was instrumental last year in the defeat of the Massachusetts assisted suicide referendum, Question 2. John Kelly and others deserve our thanks for their hard work and efforts. I was delighted to be among those that are opposed to assisted suicide legislation but I am concerned we are fighting an uphill battle. In fact it appeared to me the audience was dominated by proponents of assisted suicide. This is disheartening. Equally problematic was the fact very few people with a disability were present (by disability I mean people with an obvious disability such as wheelchair users). In a large room filled to capacity of well over 100 people I would estimate there were less than ten people present that used a wheelchair. This is a real problem symbolically and practically because it reveals how disenfranchised we people with a disability are. Merely getting to the State House was difficult if not impossible for some people with a disability. I hate to admit this but my testimony was terrible. I am a good public speaker but failed miserably to impress. I have lots of excuses or to be kind to myself legitimate reasons for why I spoke so poorly. The trip to Boston was going to be brief. I left on Monday and returned home Tuesday. I have not been to Boston in many years. I now remember why I do not go to Boston--it is a very difficult city to navigate for a wheelchair user such as myself. My visit was especially difficult because it had snowed in Boston a few days before I arrived and the streets were clogged with snow. Finding curb cuts and a place to cross the street was a challenge. More than once I had to take a much longer route to get to where I was going. This I expected. What I did not expect was the ADA nightmare that the Omni Parker House presented. I chose this hotel for one reason--it was two block from the State House. The Parker House was without question not accessible. Valet parking was at the center of a small side street. There was no curb curt. The valet entrance to the hotel was not accessible. I exited my car and had no choice but to navigate up the street in the road. This was not less than ideal it and was to a degree dangerous. The main entrance was unacceptable. The automatic doors were extremely narrow and it is unlikely a person using a power wheelchair could get in the building. Regardless, the lobby was gorgeous and hotel staff exceedingly polite and efficient.

I can overlook the awkward entrance and valet parking. This is uncommon but I am staying one night and the location is ideal. I tell myself forget it--a minor inconvenience. I get to my room, throw my bags down and go out eat a lunch that was delicious. I go back to my room and realize I have a major problem. The bed is high--really high. Not a chance I can make the transfer. The bed is as high as the dresser in the room.

This is an increasingly common problem. The fashion trend in the hotel industry is for beds to be high. These beds look good and I am sure housekeepers love them because it is involves less bending over when sheets are changed. I call the front desk to complain and they connect me to housekeeping and two very polite men show up. The established solution I am told is to remove the box spring. They do this and I can now make a transfer. I now know why beds have a box spring. I spent a miserably uncomfortable night on a mattress that was a lumpy mess. I also woke with a small but very red skin mark. I am not happy. I pack up my things in the morning, check my bag, and head off the State House--an impressive building indeed.

The State House is indeed two blocks away but if you use a wheelchair the State House is actually four blocks away. Four block that are uphill. I arrive early am relieved to find an accessible restroom. The room where the hearing is being held is easy to find. Wheelchair access in the room leaves much to be desire. Essentially a wheelchair user is relegated to the aisles. The assumption of coure is that a large number of people that use a wheelchair will never appear. Once settled in the room, I wait over two hours to give testimony. The room a veritable steam bath and I am spent by the time I speak. I struggle in the heat and felt sick. I did my best under the circumstance but my best was not very good. I provide this personal narrative to highlight an essential problem: people with a disability are grossly under represented for symbolic reasons--I accept this as a given. In addition, 23 years post ADA real daunting logistical barriers are common place. These barriers are so overwhelming there is no doubt in my mind some people with a disability could not attend the hearing because it was physically impossible to get to the State House. I had trouble too but I am well aware I enjoy a position of privilege. I had the support of Not Dead Yet and could stay in an expensive though not very accessible hotel. I had my own car. I could afford to go out to eat and had a nice dinner. I was not dependent upon mass transportation or an ineffective para-transit system. I do not use a wide or large power wheelchair. I do not have autism so the large overheated room with far too much stimuli did not affect me as it did others. This list could become very long. The point is we people with a disability were grossly under represented for reasons I find objectionable. Physical barriers are simply unacceptable. Two final points. First, the drive home was twice as long as usual. I drove through a snow storm and the roads were slick with snow and ice. A three hour drive became six hours. Second I have mixed feelings about the hearing. Three minute presentation are useless. Testimony is essentially a brief summary published work or opinion. I am glad I attended the hearing and consider my testimony and the testimony of others opposed to assisted suicide legislation critically important. Yet on my snowy drive home I could not help but worry. Will a staffer collect the testimony into two neat piles: for assisted suicide and opposed to assisted suicide. Will this staffer, who might not be familiar with the issue, write a one page summary of the testimony. Will politicians delve deeply into the materials provided which would take days to read through. I doubt it. I am skeptical and might be wrong. This is not a constructive observation because I have no viable solution or alternative to offer. For better or worse, I witnessed and participated in the democratic process--a process too few people with a disability have the power to attend.

Monday, December 16, 2013

More details are emerging regarding the fake interpreter at the Mandela memorial. The fraud, Thamsanqa Jantjie, was a qualified interpreter hired by the African National Congress from his firm South African Interpreters. In multiple interviews Jantjie stated he had a sudden schizophrenia attack and was hearing voices and hallucinating. I am far less interested in these sort of details than I am with the way the incident has framed deaf people in particular and more generally disability There is an excellent article in the Guardian, "The Fake Mandela Memorial Interpreter Said it All". Link: http://www.theguardian.com/commentisfree/2013/dec/16/fake-mandela-memorial-interpreter-schizophrenia-signingTwo quotes leaped off the page for me.Those of us who hear well and do not understand sign language assumed that his gestures had meaning, although we were not able to understand them. And this brings us to the crux of the matter: are sign language translators for the deaf really meant for those who cannot hear the spoken word? Are they not much more intended for us – it makes us (who can hear) feel good to see the interpreter, giving us a satisfaction that we are doing the right thing, taking care of the underprivileged and hindered.Now we can see why Jantjie's gesticulations generated such an uncanny effect once it became clear that they were meaningless: what he confronted us with was the truth about sign language translations for the deaf – it doesn't really matter if there are any deaf people among the public who need the translation; the translator is there to make us, who do not understand sign language, feel good.The above reminds me of why the ADA has failed. There is no social mandate to support the law. There is never wide spread outrage when the civil rights of people with a disability are violated. No one cares if I can get on or off a bus, train, or plane. No one cares if an interpreter shows up or if they are competent. Let's just make a joke of this. Let's not think about what a person with a disability can do. The only thing others think about is what a person with a disability cannot do. Until this line of thinking is undermined disability rights will remain poorly understood and the sort of advances needed to improve the lives of an untold number of people illusive.

Tomorrow I am giving testimony before the Massachusetts Legislature Joint Committee on Public Health in opposition to H 1998 which would legalize assisted suicide in the state. Below is my very short statement. In the fall of 2010 I was seriously ill. After 35 years of of paralysis I developed my first and only major wound. My wound needed to be debrided—a bloody and arduous procedure that was the first step in what knew would be a long recovery process. Anyone familiar with the complications associated with spinal cord injury knows the type of wound I had (stage 4) is a potentially life threatening condition. In the initial stage of my recovery my concerns were limited. The day following the debridment I simply wanted to stop vomiting. I also wanted relief from the high fever I had caused by MRSA. I was very sick but not rattled. I knew I would recover. I was not going to die.

I am haunted by my experience in the hospital. I am not haunted by my physical recovery which was in indeed long, expensive, and was without question the most difficult period of my life. I am haunted by the way a physician treated me. In the middle of the night a hospitalist I had never met examined me. I had a high fever and had been vomiting for hours on end. In the Hastings Center Report I wrote about what took place. The physician asked me:

“if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.”

The litany of disaster is all too familiar to me and others with a disability. But even this did not bother me. It was merely the build up to an offer to end my life. I was told “the choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.”

My experience is directly relevant to the debate about assisted suicide because I was not in any way terminally ill. Yet a physician deemed my life not worth living. Disability in this physician’s opinion was a fate worse than death. Three years later I remain shaken. I am shaken because people with a disability who publicly express a desire to die are all too often accommodated. The request is perceived to be a rational response to disability. Thus what I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies and routine illnesses. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it.

I realized that fateful night my existence was not valued. I knew I had to justify why I had the right to live. I asked my extended family to visit me at all hours of the day. I had someone put in my chart that I was divorced, had a son in college, earned a PhD from Columbia University, and published in many peer reviewed journals. I did not do this to brag but establish my worth as a human being. Worse yet, I am not alone. This experience shattered my confidence. For a long time I felt ashamed. I wondered was the physician correct? Did my life lack value? Was my desire to live selfish? I did not tell anyone about what took place for over a year—not my family friends, or colleagues. The shame I felt was deep rooted. Eventually I told a former lover who told me I had to write about why took place. I did and it was a gut wrenching experience. I am deeply gratified the Hastings Center chose to publish my essay about what took place. The most gratifying aspect of writing about my experience was the response. Hundreds of people have written to me who either witnessed or had comparable experiences. So please listen to me very carefully. All the safe guards in the world that accompany assisted suicide legislation are inadequate. These protections are an illusion in a world dominated by physicians such as the one met.